Slow turnaround time for data requests is bogging down Nebraska cancer research

February 1, 2024 3:00 am

Dr. Ray Bergan’s research lab and researchers in the Fred & Pamela Buffett Cancer Center at the University of Nebraska Medical Center. (Kent Sievers/UNMC)

In 1982, Nebraska took a crucial step in the fight against cancer by establishing its cancer registry. This repository of information on cancer cases, encompassing details such as cancer type, severity and patient demographics, was envisioned as a vital tool to reduce cancer incidence and deaths.

Fast forward to the present, and the importance of the registry remains undiminished. Cancer and public health researchers heavily rely on this data to discern trends, pinpoint causes and gauge the effectiveness of prevention strategies and treatments.

However, a growing concern has emerged in recent years, casting a shadow on the state’s cancer research landscape. Researchers in Nebraska are facing an uphill battle in obtaining timely approvals for their data requests from the state registry. What once took a matter of months has now ballooned into year-long waits. Some researchers have been forced to abandon their projects altogether due to the long periods of silence on their data requests.

This predicament directly impacts the potential for groundbreaking advancements in Nebraska’s cancer prevention strategies. Compounded by the fact that some researchers are resorting to data from other states, this delay threatens to hinder our ability to make proven progress in the fight against cancer within our borders.

The ripple effects are not confined to the academic sphere alone. Delays in data approval impede researchers from accessing crucial funding sources, particularly from the National Institutes of Health. NIH grants serve as the backbone of research funding, and without them, cancer research in Nebraska is jeopardized.

The risk looms large that our state may lose top-tier researchers to more accessible data environments in other states, where the wheels of progress turn more smoothly.

Amidst this concerning backdrop, we extend our gratitude to State Sen. Brad von Gillern for spearheading Legislative Bill 1172, an initiative that mandates a response to cancer registry data requests within a reasonable eight-week timeframe, while still protecting patient data confidentiality. This proposal, if enacted, stands to alleviate the bottleneck that currently plagues our researchers.

The Nebraska Legislature’s commendable track record in supporting cancer research further underscores the urgency of rallying behind this crucial legislation. Recent appropriations, including $2.7 million for pediatric cancer research and $15 million for pancreatic cancer research, demonstrate a commitment to combating the diverse facets of this formidable adversary.

Supporting LB 1172 is not merely an endorsement of efficient bureaucracy; it is a resounding call to safeguard our researchers’ ability to conduct invaluable work and, in turn, reduce the burden of cancer within our state. Time is of the essence, and we implore our legislators to unite in ensuring that Nebraska remains at the forefront of cancer research, with no researcher left behind in the quest for a cancer-free future.

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David Crouse
David Crouse

David A. Crouse, Ph.D., is board president of Nebraska Cures, a nonprofit that supports, promotes and advocates for health science research and education. He is a retired emeritus professor in the Department of Genetics, Cell Biology & Anatomy at the University of Nebraska Medical Center. He also served in senior executive administrative roles for his last 15 years at UNMC.